ERA EMMA ALICE testing thread 8

[Gardenlady543]

@2021ivfagain @kerrym87 @Janefx40 @seven201 @thislittlebird @Spin101 @Enfys23
@CailinInUK @BewilderedBee @Loz2467 @Lori2022 @VenusStarr @clhiu @Faithhopelove83 @APSR @ChickenT2b @Mina209 @IVF22 @Lizzybeth1988 @AM08 @Fluffykins33 @Sar1010

Continued in from thread 7 :)

Just trying to catch up on here. @clhiu I am very sorry to hear the outcome. I hope you’re doing okay and getting a plan together is helping.
@CailinInUK I think you’re incredible going through this many egg collections and after your losses too. Crossing fingers for this one to get a euploid and hope there are some that pass the PGT M too.
@Gardenlady543 I was so sad to see what happened with your surrogate and that is shocking behaviour that decisions excluded you. Wishing you every luck for today, you are one strong lady, so hoping today goes well.
@2021ivfagain hope you are feeling a bit more settled with a plan to manage results. Doxycycline is very easy to get hold of online. I got some after a tick bite in Scotland. It came very quick.
Hope everyone else doing okay.

I had a really good break with DH. It’s been over a year since we last had some leave that wasn’t IVF focused. It was so nice. I did have to ring on day 1 during my holiday though.

I am struggling at the moment though as the clinic are being very difficult about communicating with me and I still don’t know when to start meds or what dates for next cycle are. In previous fresh cycles I’ve started norethisterone day 15/16. I’m day 15 today and clinic still haven’t told me. Makes me so anxious. I rang on Monday about chasing private prescription and they were plain rude and rushed me off phone. After feeling really positive and relaxed from the holiday I was instantly stressed and tearful. Why does communicating with the clinic have to be one of the stressful parts of this? Feel the nurses have no empathy.

Thank you @Enfys23 , it’s been really tough, but having next steps to follow and things to try is keeping me going for now as well as therapy. I’m sorry your clinic isn’t responsive or helpful, I know how much hangs in getting timings right and not miss a single cycle, especially when it could be avoided simply by better communication.

@Gardenlady543 I’m thinking of you today and hoping to hear the good news you so deserve X

Thanks everyone. So good news, my scan went well, finally something happened how it's supposed to!

@CailinInUK it's so hard to know what to do, it sounds like you've always done what sounded like the best decision at the time. Fingers crossed for some risk free euploids from this batch!

@Enfys23 the poor communication has really wound me up before, at one point I called them inhumane!! I usually start noresthisterone from CD18, did they get back to you?

@Gardenlady543 wonderful news!! I’m so happy for you. Been thinking of you ALL day and excited/scared, etc, so can’t imagine how you were feeling!

Thankyou @CailinInUK you guys are so supportive, I know how triggering this stuff can be, but if anyone want to see I just put the video of the heart beat up :) imgur.com/a/Si7anID

@Gardenlady543 One big lou YESSSSS to you. So happy things are working out this time ❤️

*loud that is!

This is wonderful ❤️

@Gardenlady543 That’s great news. I’m really pleased your scan went well.

@Gardenlady543 beautiful news. Sending all the positive vibes.

I feel like my symptoms have come back of atopobium vaginae due to reduced oestrogen which automatically raises ph. I have been taking two vaginal probiotics a day and even Flora femme is not helping. Today I resorted to two canesbalance as well: one canesbalance last night with Flora femme and one this morning with lakcid intima vaginal probiotic (it has rhamnosus and gasseri strains). So now 2 vaginal probiotics a day plus 2 canesbalance a day. Plus two oral probiotics and 6 oral probiotics a day for a possible urinary tract infection which I don’t think I have.

Should I just take vaginal metronidazole for 5 days? It’s not that bad at present but due to low oestrogen my problem is so hard to fix. It was good last month as I managed to increase oestrogen.

I felt good initially when I used the second canesbalance with the second vaginal probiotic but now feeling symptoms are coming back and I’m on norethisterone now as cd14.

I’m sorry I can’t help with this @2021ivfagain

Can I ask at what point people usually get an idea of when they’ll be accommodated in their clinic for their treatment cycle and how long you have usually waited between informing of day 1 to being given a treatment protocol eg norethisterone/BCP start date in that cycle and then dates for starting stims, scans, EC and provisional ET dates?

Thanks everyone ❤️

@Enfys23 my clinic, which is a chain, will set up a protocol in advance and I'll have all the meds ready, they tell me to call in with the bleed, I'll get a callback that day to confirm I know which meds to take and when and they book the first scan in. Did they still not get back to you? Can you call today to chase?

@2021ivfagain did you get a urine sample tested and did your gynaecologist get back to you? I wouldn't add in antibiotics blind when they picked up an infection on the swab, if you're going to take antibiotics it should be a course aimed at that bacteria.

@Gardenlady543 I tried to get urine tested but they refused to book it in as they asked is it urgent. I don’t have any symptoms of urine infection. In fact, I have more symptoms of atopobium vaginae coming back. I will call again on Tuesday and say I have symptoms. My gynaecologist said to avoid antibiotics and just use probiotics.

I went into panic mode last night googling about enterococcus faecalis. I spoke with a good nutritionist today who analysed my results. She said my lactobacillus is a good sign. She is giving me alternatives to antibiotics but she is finding out from a medical person/pharmacist if I should be on antibiotics for it. She said the metronidazole caused the opportunistic bacteria to surface and I read that metronidazole now would exacerbate my current issue. So if I get atopobium vaginae back again, I don’t think I’ll be able to use antibiotics for it. She also recommended I take NAC throughout to help reduce any biofilm.

@Enfys23 I’m on norethisterone at present. I will keep taking it and start zumenon on cd21. Then continue until cd32 to really bring down fsh. Usually, my period is delayed by 3 days. As soon as I reach cd1, I call CRGH to book baseline scan. Do you have any issues booking your baseline scan? I usually go on cd3 as lining is sometimes not thin enough until cd3.

@2021ivfagain you can order these urine dipsticks from Amazon. You want it all to be normal, if there are leucocytes or nitrites then you could have a urinary tract infection and your gp will need to send a sample of urine to the lab.

100 x Aydmed 11-in-1 Urinalysis Test Strips 11 Parameter Urine Test Strips for Urobilinogen, Bilirubin, Ketone, Blood, Protein, Nitrite, Leukocytes, Glucose, Specific Gravity, pH & Ascorbic Acid amzn.eu/d/4GBRmau

@Gardenlady543Thanks so much. You are so helpful. I will do that. Also, I’ve just heard back from my gynaecologist and he says that if the atopobium vaginae has come back in my symptoms, which I feel it has, I can take vaginal metronidazole. I have some to take for 5 days. The thing is I’m using two canesbalance and two probiotics and I only get relief for a few hours a day. I don’t have any uti infections, but I will take your advice. My ph feels high and vaginal discharge feels really uncomfortable. I got really upset this morning thinking things will never be ok. I believe when my body has a dip in oestrogen that’s when things get bad. I’m going to have to beg for some estradiol after transfer.

Are you still taking the vaginal probiotics? I feel as though I need to continue taking two a day but don’t know if that will be allowed.

When you took vaginal metronidazole, did you take balance activ straight afterwards with probiotics?

@2021ivfagain I took oral metrodiazole not vaginal, but I took vaginal clindamycin and used vaginal probiotics while on it, just spaced it out. Sounds like you have a plan. When will you do the next transfer? I'm still on vaginal probiotics daily, not sure when to stop. I might reduce to twice a week after 8 week scan.

@2021ivfagain I am glad the gynae got back to you.
My clinic is the one that doesn’t do baseline scans. So usually when rang with day 1 I’ve been rang back eventually and told when to start meds, booked for day 10 scan and given provisional EC date. But it’s been very slow this time bordering on too late and I’m still in limbo on day 18.

@Enfys23 That sounds really hard. Being able to have a baseline scan is standard. Can you go to a different clinic?

@Gardenlady543 I have managed to get my urine tested at the same time as having bloods. I’m not experiencing any uti symptoms but I did say about my vaginal symptoms. I just get abnormal discharge and raised ph. I had this with atopobium vaginae. I’m stuck because I know due to lack of oestrogen it will keep coming back. How many times have you taken oral metronidazole? I prefer oral antibiotics as I can use vaginal probiotics and canesbalance while taking them but it seems like a temporary fix. I did ask my consultant if I can take vagifem with hrt during oestrogen priming but he has not got back to me yet. I definitely need estradiol support after transfer, but my consultant has not yet decided. He has said I can use yesyesyes vaginal moisturiser after transfer but not when after transfer. When I did my fresh transfer for my son, I was using crinone twice a day so vaginally I was not completely dry. My consultant has now suggested I resume vaginal probiotics one day after transfer.

I’m on cd16 today so taking norethisterone and will start oestrogen priming soon. I will be starting my transfer cycle mid June and then transfer will be end of June/early July. However, I’m a bit scared as I don’t know what to do when my symptoms come back after transfer. A really good nutritionist, who is fully booked, told me treatment for atopobium vaginae will only work if oestrogen is high enough. Sorry for the moan.

I would prefer to take oral metronidazole when I start my treatment next month as I don’t know if the vaginal metronidazole will cause inflammation vaginally.

@2021ivfagain thank you. Unfortunately tied in to 3 cycle refund package.

@Enfys23 sorry your clinic is causing you added stress. Did they get back to you today? Regarding your question:
Can I ask at what point people usually get an idea of when they’ll be accommodated in their clinic for their treatment cycle and how long you have usually waited between informing of day 1 to being given a treatment protocol eg norethisterone/BCP start date in that cycle and then dates for starting stims, scans, EC and provisional ET dates?

My treatment doesn’t involve notethisterone and its long protocol but I tend to get my written protocol provided in advance of my Day 1, following the review appointment with my consultant. This outlines instructions and cycles days to start meds or go for a scan. I’d phone on Day 1 of preceding cycle to let them know I’d like to start my down regulation on Day 21 (never been a problem) then I’d call on Day 1 of following period and they’d arrange my scan for around Day 7. If that’s clear, I’d start stims same day, or day or two around that. I‘m never given a provisional EC date as that depends on how the monitoring goes but know some clinics do.

Keep badgering them is all I can suggest. I know you shouldn’t have to and it adds to the stress.
Have you checked your DHEA-S /testosterone following your supplements?

My period has started following my EC so will be down regging from Day 21 for next EC cycle in July. (I’m working on the assumption that I won’t have a transferable embryo out of the three recently sent for testing.)

Thank you @CailinInUK

I am feeling really upset and stressed now. It just feels like they’re seeing the failed cycles and just given up on us. Feels really awful. It’s so stressful being in limbo.

@Enfys23 is there a complaint team, because I think this lack of communication is awful. You need to know what you're doing, did you say you're with care? They have carepals, and if you say you want to formally complain they will resolve the issue.

@2021ivfagain was the urine test normal? It sounds like no matter what happens your microbiome turns abnormal, so you are probably best taking antibiotics before a cycle and then using daily probiotics during the FET.

Oh wow @CailinInUK you are right back into it, I did 3 collection cycles in a row last year. I think it's a good idea to bank as many as you can, give yourself the best changes possible for the biopsy results, you can never have too many.

@Enfys23 yes I agree with @Gardenlady543 . Say you wish to make a complaint. In no time at all, they will then probably resolve things very quickly. Do you have your protocol letter already? That should signpost when to call them/when to start taking drugs etc.

@Gardenlady543 not so much doing banking - just assuming none will be transferable out of the three sent for testing, which is the likely scenario! However there is a chance, if not we wouldn’t be bothering at all :) . Ideally I’d bank two transferable but getting one might be a tall order. I can fit in three more cycles this year so hopefully will come up trumps at some point.

How are you doing?

I'm really sorry to hear about your clinic's terrible communication and the distress it must be causing you @Enfys23
My clinic would usually put me on Norethisterone from day 14 for 12 days as standard, but can extend up to 25 I believe. Once the paperwork is signed you can have the nurse sign your NET prescription or post it pretty much straight away off the back of a quick call or appointment although the require a full 1 HR nurse consultation before the start of actual treatment and issuing prescriptions for the cycle, sometimes getting one of these appointmens scheduled can take up to 2 weeks.
I hope you can resolve something.

@CailinInUK , definitely a good thing you can bank, I would also do that and bank as many as I could before testing if I could afford it, and that's evem without the added PGT-M obstacle.

I hope everyone's doing OK. I had my appointments with Dr Shehata's clinic last week and waiting for the test results, have my follow up in a couple of weeks, let's see if there's hope for me in immune issues.